Bit of a dilemma - would appreciate your thoughts :)

[looviloo]

Hi, thanks for reading . Dad has been in a really lovely care home for the past two months and seems to be settling (very slowly!). This follows a bad fall in which he broke his shoulder, and needs a stair lift to get down stairs. He's doing well; eating better, taking his tablets now etc. But, and it's a big but, refuses to accept that he's better where he is rather than back in his old house which has steep stairs (no room for a stair lift), and where he'd have far less company apart from the care workers popping in.

So his old house has been empty for the past three months, and we're going there when we can to check on it, tidy the garden and so on. As time goes by I'm worrying that it's draining money, and also is a big physical and mental drain on us... although I do realise that three months isn't long in the grand scheme of things.

Today, dad got a letter from someone interested in buying the house privately. I let dad open it, and it caused a difficult conversation about the future. Dad's main focus is that he 'doesn't want to die in the care home' :-(. I understand this, but don't know what else to do??? It's a really lovely home, small and very caring set in beautiful countryside. But it feels like he won't be happy anywhere except in his own house (which is filled with hazards).

Dad was diagnosed with sub-cortical vascular dementia a couple of weeks ago (we're waiting to get the diagnosis in writing) and the psychiatrist told him he would thrive better if he stays where he is. My feeling is, that if he went home he'd be housebound pretty quickly. I've tried to point out all the issues to dad as kindly as I can but obviously there's no reasoning with him (although he did say he'd 'think about it').

I'm so frustrated! We're doing our best, but there's a bit of me that wants to throw my hands in air and let him just do what he wants! Mind you, he wouldn't be able to organise it for himself, and I'm not inclined to do it for him when I believe it's a backward step. Any thoughts or advice??? We have power of attorney for health and welfare but how can we act on it, if it's against dad's wishes?

 

[Beate]

You can only act on it if he has lost capacity. Then his wishes don't play a huge part anymore as they can, as you see, be irrational. Attorneys act in the donor's best interest. If it's in his best interest to stay in the care home and you know he couldn't stay at home then stop trying to convince him and just act for him. If you have financial LPA as well you can sell the house on his behalf. To be honest, I wouldn't even tell him. Love lies are the order of the day now. And if you have financial LPA you ought to try and keep his money together and not pay for the upkeep of an empty house anyway. I am puzzled though why anyone would send him a letter to the care home instead of contacting you?

 

[looviloo]

Thanks Beate, appreciate your response. The letter was sent to his house, and since it was handwritten I thought it was from a friend so gave it to dad on my visit :-/.

Yes, I'm using the financial LPA at the moment to keep his finances in order and pay the care home. How can it be determined that he has lost capacity? He has this dementia diagnosis and we are (for certain) acting in his best interests, but he is very convincing in his arguments and can present himself very well to anyone who doesn't know him properly. It also varies daily. Today he was able to reason things out a bit better, hence the discussion.

It doesn't help that the care home manageress (who has been extremely supportive in many, many ways) thinks he could possibly manage himself with 4 care visits a day. She hasn't told him this of course, and she admits there would be plenty of downsides to this and a LOT of worry. I think she's coming from the point of view of someone who works with people far worse in their capacity than dad. The psychiatrist on the other hand could clearly see that dad is best where he is. He would just decline again if he lived alone, I'm sure.

Sorry, just getting my thoughts out there. It's so difficult... we're an open family who talk a lot, but you're right... love lies seem the best solution.

 

[Long-Suffering]

Hi Looviloo,

As you say, this is a difficult decision. I would think it over a bit more if I were in your situation.

As Beate says, you can make decisions for your dad once he is certified as having lost capacity, but from what you say, he still seems to have capacity. Our solicitor was very clear that the LPAs could only be used if the person with dementia was unable to make or communicate any decision at all; if they are still able to make a decision and communicate that then they have a right to make that choice, even if other people, attorneys included, think it is a bad choice.

As I understand it (from what our solicitor has told us) you wouldn't be able to lie to him and sell his house without telling him if he still has capacity. This was something my mum was paranoid about regarding the LPA we arranged for her, and so we went over the details several times with her and the solicitor.

Good luck,

LS

 

[Pickles53]

From the NHS choices website:

http://www.nhs.uk/Conditions/social-care-and-support-guide/Pages/mental-capacity.aspx#mentalcapacity

In relation to the second question, the MCA says a person is unable to make a decision if they cannot:
understand the information relevant to the decision
retain that information
use or weigh up that information as part of the process of making the decision

So being able to say 'I want to go home' would not seemingly be enough to confirm a person has capacity if he/she can't demonstrate understanding of the relevant information (eg the practical issues arising of living at home).

 

[looviloo]

Our solicitor was very clear that the LPAs could only be used if the person with dementia was unable to make or communicate any decision at all; if they are still able to make a decision and communicate that then they have a right to make that choice, even if other people, attorneys included, think it is a bad choice.

Hi Long-Suffering, thanks for this, it's what I suspected (we sorted out the power of attorney ourselves, so haven't spoken in depth to a solicitor about it). What confuses me is... my dad can make decisions, but they are constantly changing. He can't retain the information for long enough to think around a problem in it's entirety. For instance, during his intermediary care, he practically begged me to move him to the care home he's now in (which I did) and accepted that he would never live in his old house again. He said he wanted to sell the car (yes, he still has a car). But today, he wants to live back in his old house and wants the freedom to drive i.e. won't consent to me selling the car for him. We go round and round in circles!

http://www.nhs.uk/Conditions/social-care-and-support-guide/Pages/mental-capacity.aspx#mentalcapacity
~
So being able to say 'I want to go home' seemingly would not seemingly be enough to confirm a person has capacity if he/she can't demonstrate understanding of the relevant information (eg the practical issues arising of living at home).

Thanks Pickles, for the informative link... it makes me think I need to talk to dad's GP about his mental capacity, especially in light of his recent diagnosis. Dad repeatedly says that he can't consider all the information at once, forgets about the day-to-day things that would need to be done if he moved back to his house, and often doesn't even remember why he's where he is (general decline leading to a serious fall and a hospital stay that included delirium). He was very depressed in his house last winter and talked all the time about wanting to move out. Now he wants to move back again. It makes no sense :-/.

Talking here is helping me put my own thoughts in order

 

[garnuft]

Talking here is helping me put my own thoughts in order

And that's a good thing.

It's so hard, my Mam has died but I feel a tremor of horror when I read about problems like yours.

Much sympathy.

Keep on swimming forward, treading water keeps you afloat but it's just as tiring and you end up in the same place.

Hard times.

 

[lin1]

Hi. Many people with Dementia want to go home, even when they are in their own home of many years
Whether this is the case with your dad, I cannot say.

Speaking personally I think it would be best to use some love lies for a while untill you can arrange to have dads capacity checked by a doctor preferably a Consultant if dad has one.

Just to give you a few ideas
Having work done on the house.
The DR says, you need to stay here for a while to build up your strength.

 

[Risa]

Can you get anyone to assess your Dad's physical needs? That might help you with your decision, especially if they say a stair lift is a necessity.

 

[JLSW]

Hi,

Your dad will be assumed to have capacity unless proven otherwise, consequently it is deemed to be his choice to remain in the care home at the moment. If your dad is asking to return home (as mentioned in this thread, many people do), the care home need to apply for a Deprivation of Liberty (DOL) authorisation; otherwise he is being deprived of his liberty unlawfully, i.e. kept in the care home against his will. During the DOL process your dad's mental capacity will be assessed.

- If he has capacity to make the decision to return home and still wants to, then by law, he is entitled to return home; in this scenario, request a social care needs assessment from social services and an occupational therapist assessment for his mobility etc. It may be that he can be managed at home with the right services in place.

- if he does not have capacity, the Deprivation of his Liberty, i.e. to remain within the care home, will be authorised; you will then be able to use your Power of Attorney regarding his health and welfare to decide to keep him in the care home in his best interests.

I hope that makes sense; it's not an easy situation, particularly as you know that he is doing better in the care home than he would if he returned home. It all depends on his mental capacity.

Good luck

 

[Long-Suffering]

Hi Long-Suffering, thanks for this, it's what I suspected (we sorted out the power of attorney ourselves, so haven't spoken in depth to a solicitor about it). What confuses me is... my dad can make decisions, but they are constantly changing. He can't retain the information for long enough to think around a problem in it's entirety. For instance, during his intermediary care, he practically begged me to move him to the care home he's now in (which I did) and accepted that he would never live in his old house again. He said he wanted to sell the car (yes, he still has a car). But today, he wants to live back in his old house and wants the freedom to drive i.e. won't consent to me selling the car for him. We go round and round in circles!



Thanks Pickles, for the informative link... it makes me think I need to talk to dad's GP about his mental capacity, especially in light of his recent diagnosis. Dad repeatedly says that he can't consider all the information at once, forgets about the day-to-day things that would need to be done if he moved back to his house, and often doesn't even remember why he's where he is (general decline leading to a serious fall and a hospital stay that included delirium). He was very depressed in his house last winter and talked all the time about wanting to move out. Now he wants to move back again. It makes no sense :-/.

Talking here is helping me put my own thoughts in order

Hi Looviloo,

Glad the info was of help. I'm glad I had a solicitor draw up the LPAs for us because he explained everything very clearly and saved us all the hassle we have had trying (and often failing) with other types of documents and allowances. We paid through the nose for for his services, though, so I don't blame you for doing it yourself if you could.

BTW, you say that you have the H&W LPA. Do you also have the one for property & financial? If you wanted to sell his house, you'd need that rather than than the H&W, wouldn't you?

To me, it sounds like your dad maybe knows inside that he is better off in the home, but naturally he wishes he could go back to his own house and still be able to drive, etc. Even if he is settled in the CH, it's only been 3 months and he probably needs time to come to terms with such a big step as selling his house; it's a move of such finality, like once it's done that's it, there's no turning back. I think that would be hard for anyone. Just try giving him a bit more time and hopefully it'll work out okay. However, if he remains adamant that he wants to go home, you may well have to consider that.

I remember a friend of mine said to me something I've never forgotten and something that has really helped. He said to me, "Your parents might well have mental problems, but remember they are both adults, so however much they inconvenience you or disagree with your opinions, while they still both have mental capacity they deserve to have their decisions respected however much they inconvenience you or however much you disagree with them". That piece of advice has made it much easier for me to make decisions, or rather to allow them to make their own often infuriating decisions without me getting stressed!

JLSW has explained capacity and DOL really well. That's it in a nutshell.

Best of luck,

LS

 

[looviloo]

Thank you, to everyone who has replied and offered advice, I do appreciate it! I'm so tired today, since I didn't sleep well last night for thinking about the various issues. Yet another sleepless night among many! To put my dilemma in context - my sister and myself have been supporting dad over the past ten years, so that he could stay independent. His decline has been gradual for most of that time, but the past twelve months have shown periods of fairly rapid and sudden impairment. It has been an enormous worry, and it's not just me who worries... several of his friends have approached me, suggesting that dad needs to move for his own safety, or that he shouldn't be driving anymore.

The potential for a deprivation of liberty order has been mentioned once or twice... if he tried to 'escape' the home for instance, putting himself in danger, then it was explained to me that the home would likely apply for a DOL. Dad is such a mild mannered person that I'm almost certain he wouldn't do that. He is the very picture of politeness and compliance with the care home staff! But he sits in his room and stews. And he tells me about all the thoughts running through his head (such as being tempted to jump on the bus that runs past the home, or somehow making his way back to the old house - he says it with a lot of conviction). I usually say bland things, like it would be better to take someone with him etc. I have offered to drive him there, but he backed out saying it was nearly time for lunch (which it wasn't). He's obviously very conflicted about it all.

Well, the letter from the psychiatric consultant arrived today. Dad's ACE III score was 69 showing mild/moderate dementia (of the vascular type). It's a long letter recapping his medical history, and mentions that his need is 'reactive' (?) and there's evidence of 'passivity' (?). The consultant agrees that the care home is 'meeting his needs' but says she realises he might try to return home (but she doesn't give any opinion about that particular outcome). She goes on to advise that if dad wishes to continue driving then he needs to contact the DVLA because of his diagnosis, and in the meantime it would not be wise to drive. I'm going to have to break that news to him :-/.

Next week, we're supposed to be meeting the care home manager to set up a care plan for his stay in the home, with a view to it being long term. The care home needs some reassurance of our plans now and money arrangements need to be made. So I think this is likely to bring it all to a head and I'm not looking forward to it. I suspect that dad will go along with it all, without fully understanding the implications, and then continue to badger me in the background to enable him to go home. Sigh.

Thanks again for reading and your kind responses. We have a much needed weekend away, so I'm hoping to relax and will mull it all over. So much to think about!

Edited to add: yes, LS, we have financial POA and I'm currently looking after dad's money. Thank goodness we did that! Ignoring the dementia for a moment, he simply couldn't have signed cheques after his fall, so the POA has helped with that (although registering it with the bank was stressful, but that's another story).